1 year + 142 days

Posted on: 17/08/2015

Ava's therapy is going well, although some days when she is practicing her walking I have noticed a real tendency to lean on to the person who is holding her hand. This is partly due to the lack of proprioceptive feedback her body receives, as in general her nervous system is under-responsive, but also out of a desire to feel safe and, crucially, because it is easier. However in order for her balance to recover, her brain needs to be challenged and attempt to compensate, which doesn't happen if she is too reliant on the other person. So we are now trying a lightweight Zimmer frame at home, in the hope that this will be less passive and that Ava's brain will take greater responsibility for where her body is. She has practiced at home all weekend and is managing quite well, although judging where to place it needs some practice. She is at least enjoying using it and the feeling of independence which it affords her. Angelina is also enjoying some independence this week, as she has gone to stay in the country with her cousins Milly and Grace. She is a fantastic sister to Ava but I'm very conscious of the level of responsibility she feels and the general stress she carries around from the weight of our situation. This week she is allowed to be a normal, carefree 10 year old and although we are all missing her, we are glad she is having fun - and ever thankful for FaceTime.